Advocates: Where was CDC for milestone in chronic fatigue syndrome research?

Looks like the CDC’s chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some ‘splaining to do in Washington.

A possible research breakthrough — the discovery of a correlation between CFS and a retrovirus related to the AIDS virus — has fired up the medical community in recent weeks. “This is going to create an avalanche of subsequent studies,” Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month.

But will the Centers for Disease Control and Prevention play a role in that research? It hasn’t so far. Advocates have been pushing the Atlanta-based CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more. Most of them are adult women.

The agency’s role in CFS research could come under the spotlight Thursday, as a federal advisory committee begins two days of meetings where the retrovirus findings will be at center stage. Advocates have called for help in packing the meeting to signal the committee, which makes recommendations to Health and Human Services Secretary Kathleen Sibelius, that they want action now.

Reeves is a controversial figure in the CFS community, blamed by many for downplaying the severity of the disease and refusing to fund meaningful research into a viral explanation. Just Google him and see for yourself.

Without naming Reeves, the HHS advisory panel in May called for his ouster and for federal health officials to “establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.” Minutes show the committee talked about whether to name Reeves in its recommendation.

“We have heard from the IACFS/ME President, who represents the scientific CFS community, call for new leadership within the CDC’s CFS program. We also learned that a CFS patient group has over 1,000 signatures asking for a change in leadership at the CDC’s CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership at the CFS CDC program.”

The action came after the world’s largest group of medical professionals promoting CFS research made a similar recommendation — in somewhat blunter terms.

CDC’s research on the disease “needs … a progessive, open-minded and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community,” wrote Dr. Fred Friedberg, president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Friedberg called on the CDC’s new leadership to give CFS research the urgency it deserves as an “unacknowledged crisis.” He criticized the agency’s five-year plan for addressing the disease as lacking substance and detail and noted that CDC sponsors no prevention or clinical treatment research.

In Fact, Friedberg wrote, CDC’s top researchers didn’t even show up at his group’s annual meeting this year: “Noticeably absent from our 2009 meeting was the senior leadership from the CDC CFS research program.”

Advocates also planned to present an online petition calling on the CDC to stop using an empirical definition for the disease, also known as the Reeves 2005 definition, in its studies.

They contend that language is too vague, too subjective and prone to improperly including patients who actually suffer from depression or another mental disorder. As a consequence, they say, the CDC’s work is ineffective because it includes patients who have been misdiagnosed.

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79 Responses to “Advocates: Where was CDC for milestone in chronic fatigue syndrome research?”

I’ve spent twenty-five years (post Mononucleosis) exhausted, cognitively compromised, and generally debilitated in the manner of the CFS/ME standard profile. During those years I was invariably told by physicians and specialists that there was no such thing as Chronic Mononucleosis or Chronic Fatigue. And when I was diagnosed some years later with Fibromyalgia, all I had to do was look at how other women similarly diagnosed were being treated both by the medical community and the general public to decide I’d ignore that diagnosis. There is something else that should be stressed: most of us with CFS/ME can’t tolerate medications. This adds to the psychiatric stigma that has been attached to the illness because whenever a medical practitioner attempts to treat the symptoms, the patient will often succumb to those side-effects the pharmaceutical company has labeled “rare.” The physician or specialist has already labeled you as having an imaginary illness. Your case isn’t helped when you also develop the rare side-effects of medications.

Congratulations on a well written article. As far as I have been able to determine, you are the first investigative reporter to have discovered this story. It has enormous implications, among them the health of over a million Americans and the safety of the nation’s blood supply.

Being based in Atlanta, you are in a unique position to do follow-up reporting by ferreting out information from disgruntled CDC employees. There seem to be plenty of them, if the following link is indeed an unofficial CDC chatroom. Go here for an earful:

Thank you for your article.
I’ve waited 24 years long for a reporter outside of our CFS-ravaged group, that would be willing to investigate and report on the truth.
The truth: The CDC/ NIH perpetrated a travesty since Day One. Reeves is a huge part of the problem in latter years, as it seems any research that did come in, it was always back to “too much stress” or childhood abuse can cause CFS.
We (PWC’s) all KNEW it was viral.
Keep looking, there’s plenty of discrepancies, misappropriated funds, and downright abuse for a million lifetimes to investigate.

This article and all the comments need to be sent to both the head of the CDC and the head of DHHS. I have Freidan’s email but don’t have Sebelius’ email.
Anyone want to send this article and the comments to both these people so they get another taste of what we all think and believe?

Those of us with CFIDS already KNEW we had viruses and KINEW in our guts NOT to donate blood or organs for fear we would pass this hellish disease on to others. And this is a disease that I would not wish on my worst enemy. I also wish that I had died quickly from a heart attack than have lived this way for 20 years. But, with family you just can’t think or act in that manner. No matter how “worthless” we are we are still needed by those that we love and love us.

Please keep digging into the CDC, the CDC/CFS, and Bill Reeves. I do believe, like most CFIDS people, that there is something far more sinister going on with them than just stupidity and greed on the part of Reeves and the guys before him. Something FAR more rotten like those poor black men who were given a sexual disase to see how they would get sick and then die. That’s our government and I would not have believed that story and others had I not seen the offical documents and US pronouncements that yes, this was true.
Thanks – keep digging!!!!!!!!

Thank´s for a very well written article. This incredible dirty laundry has to be washed in public. The CDC standpoint on the subject of CFS not only is devastating to all americans struck by this horror of disease and neglect, it also has a great impact of how this is treated and seen upon in the rest of the world aswell. We in Scandinavia for example are watching every step on this matter now. The Whittimore Peterson Institute has given us some hope and we too should need investigation from the media, like yours! It´s totally quite here.
Thanks!

Excellent article, but you’ve only just tapped the tiniest tip of the iceberg. A website was recently brought to light called CDCchatter.net, which was set up several years ago by Bob Keegan, the former deputy director of the CDC. He set it up so that the employees of the CDC had a spot to chat among themselves. There are links to a particular group of messages that are just mind-boggling! One of them reads: “Re: New progressive leadership needed for CFS at CDC

(Score: 1, Interesting)

by Anonymous on Oct 15, 2009 – 03:25 PM

We (I can’t say where I work at CDC) do believe this is the case with CFIDS. We also believe that a single virus does in fact set off a number of other viruses that ripple through the entire body. We have quite a bit of data showing the damage to the body, including the brain, and it is frightening and compelling.

We also fear for the nation’s blood supply and the fact that this “new” virus has been out there in the blood supply and out in the public unchecked for quite some time. There is great fear that a virus, like H1N!, might “set” this “new” virus off and either kill quickly or cause several cancers that seem to be in high proportion in the CFIDS people, as opposed to the general pop. WE are scared. I pray our worse fears are unfounded but that is not what the evidence is showing right now. Sorry, I have to remain anonymous. I too need my job since I have 3 kids in college and a wife out of work. ”

This particular series of messages in that forum have now been locked but you can read them anyway, through several links that can be found on:

Lucie B., I have been following cdcchatter and saved all these comments before they were shut down (but, as you say, they can still be read if you just search that blog for cfs). I plan to work on a few more stories (next priority would seem to be the blood supply), but I gotta make a living and have been distracted by work for which I am actually paid.

More to come soon, I hope. If anyone has documents on XMRV in the blood supply or how the CDC has been spending its CFS money, lay ’em on me.

Jim, thank you, thank you, a thousand times thank you! I’m so glad to hear that you’ve got more on the way! I’m afraid I don’t have any documents, but you might want to talk to Hillary Johnson. She might be able to help you. She’s pretty good at knowing how to go about getting into stuff like that. She’s the author of the book Osler’s Web, and can be reached via the link in my last message. If you can find the time and you haven’t already read it, Osler’s Web will give you a huge boost in info about how the CDC got to where it is with CFS.

Please, do what you can when you can. That’s all anybody can ask. Job…actually paid… AHA! Now I remember! I used to have one of those myself, before this wretched disease took it away from me, and my ability to do much of anything else, with it. I was a nurse and emergency specialist for a long time. I loved my career, but it’s very likely where I picked up this curse of an illness in the first place. Kinda ironic, huh?

Jim, thank you so much for writing this article, and for the articles you may write in the future. You are an excellent investigative journalist, and I hope it won’t be long before that is how you are making your living–unless it’s something you don’t want.

From someone who has had 25 years of her life stolen by Bill Reeves and the CDC, you have my sincere gratitude.

There’s a certain poetic symmetry at work here. After the CDC and NIH ignore or deny the true nature of ME/CFS for decades, they’re shown up by an institute that hasn’t existed long enough to have its own building. After the mainstream media fails to pick up on this story for decades, it’s scooped by a newspaper that can’t afford to pay its reporters.

Atlanta Unfiltered has a nice big donate button on the left column of the front page (http://www.atlantaunfiltered.com). I’ve donated. If you can spare anything at all, you should too.

The CDCchatter.net forum comments were somewhat interesting but not earthshaking, really. There were many nasty, demeaning comments directed at CFIDS people. And there really was not true sympathy, understanding or support for CFS but more of a scared reaction to what damage may be done to the reputation of the CDC and the jobs there.

So, interesting forum, nothing earthshaking, and certainly NOT proof of support from the insiders at the CDC. Sorry, but the forum and its “outing” has been useful for spreading the word on CDC/CFS and the mortal fear of the nation’s blood supply – this fact scares me very much. Also, the cancer-causing virus that is associated with CFIDS and yes, aggressive prostate cancer and possibly the leukemias, lymphomas, and if I remember, cervical cancer. I was aware of the cancer connection, or rather, the higher rates of cancers in CFIDS people over 15 years ago by my internist. He told me at the time that there was also a certain type of jaw cancer that was seen in high numbers of HIV/AIDS people AND CFS sick. So, the cancer part I have heard about for years, this was the more solid proof. But remember, we need much more research on so many aspects of this connection, causation, cures, etc. etc.
The XMRV virus is also possibly critical to cancer in general or some cancers. XMRV is also possibly critical to other diseases as well. We have to wait and see what the reseach finds. So, the big issue is getting funding to the RIGHT people and NOT the CDC but rather, the WPI and its associates.

The CDCchatter.net is a blip of some interest but not a smoking gun or anything of real import.

For many years, our citizens may have been picking up XMRV from blood transfusions. If the CDC been willing to pursue viral/retroviral CFS research during the past quarter century, we wouldn’t be in this position.

If there is indeed blood supply contamination, news of it may be about to explode. Dr. Daniel Peterson, medical director of the Whittemore-Peterson Institute, has patients who have come down with CFS post-transfusion (see link below). He said attorneys who specialize in post-transfusion HIV have been contacting him looking for post-transfusion XMRV. In one case in particular, the blood donor of one of Dr. Peterson’s XMRV-positive CFS patients has been tracked down and that donor is currently being tested for XMRV.

Thank you so much for this article! Please keep investigating this atrocity! I’ve had CFS/ME for 16 years and I’m ready for the medical establishment and the government to take us seriously NOW! Let’s blow this out of the water and get a Congressional inquiry into the CDC and Bill Reeves.

Thanks for this article Jim and everyone, thanks so much for your enlightening comments. I learned a lot from them. Especially how the CDC is spending it’s money.

I’ve had CFS for 25 years as well. There are 5 people in the comments above me that got sick exactly 25 years ago as well. This is when CFS was first recognized by Bell in NY and Cheney and Peterson in CA. So what’s up with that? There is obviously some connection with major outbreaks for many if not all of us.

We cannot know because so many doctors told CFS patients this is in our heads thanks to the CDC.

Investigate Wiliam Reeves and the CDC for crimes and cover-ups in the CFIDS/ME arena. Also, cover-up of cancer-causing virus that was kept from the public for 20 years and has been in the blood supply that long.

If my young children have been infected because I was forced to breastfeed (dispite being incrediably ill and concerned about the infectious potential of ME) by the midwifes that acted as the rightous footmen for the WHO, I will be outraged. I am an educated woman that was bullied into breastfeeding because somebody else (the CDC and WHO) knew ‘better’ than me. Don’t get me wrong – I fully support breastfeeding and realise the many benefits. However, I would never have put my children at risk from potentially getting this terrible illness had I been given any reason to question it further. My children are being ripped off – their mother has been too ill enjoy the many many things they have done. What part of sorry will they be afforded by the CDC! Is there any body else that shares this experience? I was very interested to see the research linking endometriosis with ME/CFS – does anybody else have personal experience with this?
At last I dare to hope……………but first the tears have started to escape out of my fail body. Thank you WPI and all the advocates and patients that have kept it real.

Many thanks for writing this article – it has been a mystery to me all these years where the investigative journalists have been with such a huge medical scandal going unreported! I live in the UK and no-one has taken up the challenge here. I hope other reporters will start to follow your example.

Thank goodness for the WPI. Even if transpires that XMRV is not the cause of CFS / ME / FM it has done a great service in raising the media profile of this terrible illness. If you suffer from the disease mark yourself on this map designed to identify CFS “hotspots”: http://xmrv.me.uk/me-cfs-global-map.php

Dr. Daniel Peterson diagnosed me with M.E. in 1992. “Spuma like retrovirus” in my blood listed among his findings then. Medicaid/Medicare won’t cover ampligen or any other appropriate treatment. I am a Summa Cum Laude, Phi Kappa Phi scientist, world travelled, the model of a world-famous artist.

Holocausts happen because good folk can’t imagine such things. Evolution is calling for us to ‘call a spade a spade’.

We’ve neglected our WEEDING, and “Dybbuks” are running the whole world– including the CDC, NIH, etc. And their 4th Reich is on a roll with the usual game plan–reduce population with bioweapons.

For a decade fleets of unmarked jets have been spraying worldwide>>>a host of pathogens like XMRV, along with immediate & delayed catalysts for such retroviruses, topped off with strong poisons like aluminum and barium.

So why don’t they just hand out anaesthesia ?
Because DYBBUKS GET HIGH ON TORTURE.

Those who are well enough , must immeditely accomplish the long overdue Revolution that Thomas Jefferson declared essential every few decades.

When is the CDC going to do the good work that they were charged to do? It should be dismantled and rebuilt again, if it is too entrenched in denial and pleasing industry. At this point, if CDC says we don’t have a problem, we very likely do and it is being covered up. Scientific Integrity, touted as the promise of Obama, is gravely lacking at the CDC and it is NOT clear that we will have this under his new appointee, Dr. Frieden. Otherwise, he’d clean house rather than move the players around.

For a Chronic Fatigue treating physician and researcher, visit http://www.biotoxins.info. Dr. Ritchie Shoemaker of Maryland offers help that is effective and peer-reviewed.